02-52 the hospital stay

16 weeks + 1 day.

I have to admit, this photo isn’t exactly the kind of photo I envisioned I would be sharing this week. I even debated whether or not I wanted to share it. I remembered though when Lucy was in the thick of her almost 7 week stay at BC Children’s hospital that I took almost no pictures. All I have are crappy cell phone pictures of the first 7 weeks of her life (with the exception of her birth photos). A nurse reminded me that this was just part of Lucy’s story whether I liked it or not. So here it is.

Last Friday I mentioned that I had spent much of my day on the phone talking to Lucy’s specialists about what to do about her feeding issues. Her occupational therapist suggested to me that if her eating got to the point of being alarmingly bad, we would need to get an NG (nasogastric feeding tube) put back in. Saturday came and she barely at anything all morning, so Dave and I admitted defeat and went to emergency, since her paediatricians office was closed. Seven hours later, they admitted us into the paediatric unit and we are now playing the waiting game till Thursday when we meet with her surgeon (from the duodenal atresia surgery) and cardiologist from BC Children’s Hospital to get the official prognosis. From what her paediatrician can surmise the spot in her intestines where they operated on has likely contracted when healing causing a narrowing. This explains a lot of things: 1, Why she never seems hungry (because her stomach drains very slowly) 2. Why she screamed all the time when we tried to feed her, (because this was causing bad silent reflux which burnt her esophagus), and 3, why she always seemed phlegmy all the time (because the contents of her stomach were always coming up). We have a general idea of our options, but it is ultimately up to the surgeon as to what will be best. We don’t even know if this is what’s wrong–our hospital is holding off tests because as soon as she is sent to the Children’s hospital on Thursday they would just repeat everything regardless of what our hospital did. Right now Lucy is on a slow continuous feed (an ounce an hour) so that it is easy on her stomach. On the plus side, since she is not doing any work to eat and is getting all the calories she needs she gained 8oz in 2 days! She now is 9lbs 10oz. We will have a ten pound baby before we know it!

Dave and I are pretty relieved, surprisingly, at this point. Her feeding was wearing us out and it seemed like there was no solution. At least now there is some kind of answer and a possible fix for what has been going on. We have our fingers and toes crossed that this will be able to be fixed and we can go on with life…until her heart surgery that is, when we will have more hospital stays.

PS: She might have to have an NG tube in for an extended period of time and we may have to go home with a pump so she will be fed continuously. This means that I will likely not want to make too many outings because it will mean hauling around a baby with a pump attached to her. No offence, but you may not see me in public for a while if this happens. I’ll be glad to have visitors though.

This entry was posted on Tuesday, January 7th, 2014 at 8:46 pmand is filed under 52 project, Lucy. You can follow any responses to this entry through the RSS 2.0 feed.
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3 Responses to “02-52 the hospital stay”

Hello Courteney – I haven’t been a follower of your blog for very long – I found you through the TCOYF forums, and quickly added your lovely blog to my favorites list. With that in mind, I can’t imagine two better parents for sweet Lucy. She is so very fortunate to have such amazing advocates for her care and well being. I’m also glad that the nurse gave you that advice, because it is true. I think you will look back on this time and be glad that you documented this part of her journey as well.

I sincerely hope they find out what is causing your little one her tummy troubles, and get it resolved quickly. I will pray for sweet Lucy and you and Dave as you navigate these waters.
-Kerith

I’m glad you posted this photo. I too am mama to a heart baby and only shot iPhone snaps through my daughters hospital stay. It’s so difficult being in that place and trying to reconcile it with documenting your sweet perfect newborn. I love this photo, and although it may not be what you pictured this week, it is still beautiful. Hoping your sweet girls feeding issues get figured out quickly!

I regret only having my crappy quick and dirty iphone snaps while the girls were in hospital, I wish I took the time to breathe, pull out the dslr and just capture the moment. It is part of her story, and in a few months its going to all seem like a blur – this I promise you.